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Matt

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Hi Dear All!

I had posted that intro before but just for your reference:

My story (Male 41) started last June with widespread fasciculations you could feel and see all over the body and mild leg/hand/feet cramping (like you have some kind of heavy limbs!). Also felt some weakness in left arm and leg. I had been examined starting from that time by four different Neuros (including a specialized Muscle Desease Center) doing clinical and EMG-Exams on each and every limb 5 times. (all time clean!)

Then since last October every kind of weakness had vanished and I had almost 6 months without any problems apart from slight bodywide fasciculations here and there.

Since April 2006 after intensified exercise there had been again some kind of weakness regarding the left body-side, mild cramping and bodywide twitching. Repeated clinical- and EMG-exams in May had been fine so far, no reflex-changes, no athrophied muscles, no clonus etc.. This has been more or less vanished during the last months apart from increased bodywide twitching.

I had also dealt with some Bulbar/Breathing issues that had been totally improved so far. Maybe they had been related to an anxiety disorder.

But on the contrary the condition of my left limb which has been more ore less present since 1,5 years, has worsened till the last 3-4 weeks. When walking I have always a crawly, weakless and rubbery feeling but could still walk on heels and toes.
It feels like"funny-crawly" if you know what I mean!

I had been to a chiropractor who could not find after a superficial exam orthopaedic reasons for that.

I had had several repeated limb-EMGs till May and they had been fine so far but as you mentioned there are different opinions about definite answers from that. Some reputated clinics/docs state that you could mainly rule out ALS after repeated EMG´s of the same muscles after several months ( in my case 8 months) some have a different opinion!

Anyway I am scheduled for a follow-up in late September here in Germany on my own wish!

Any comments from your side, what is your opinion regarding the whole story? What I described above could this be typical for ALS?

Thank you in any case for your help!

Matt:?:
 

Al

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I wouldn't say that was typical of ALS if there is a run of symptoms that could be called typical. I think it's still a waiting game in your case Matt.
 

Matt

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Hi Dear All!

Just one question:

How is real weakness of the limb experienced, what I can not understand is that I can do heel/toe-walking for a longer distance (and this seems to me that this is the standard test they do for examining limb weakness) and find it on the contrary somehow quite uncomfortable to walk for longer periods accompanied by slight pain regarding mainly my left limb. When resting everything vanishes mainly.

I am looking forward for my updated EMG-exam (conducted on my own wish again) after the last one done in May 2006 starting in September 2005. What is also curious to me is the fact that I had problems with my limbs since April 2005 and multiple repeated EMG/NVSs did not show anything. I pray due to my wife´s illness and my small children that everything will point away from a MND this time again! What do you think if they would not find anything sinsister this time again, could a MND disease be excluded?

Hopefully the increased problems with my left limb/foot have something to do with my increased self-testing by walking on heel/toe or maybe BFCS!

God bless you all!

Matt:neutral:
 

Matt

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Hello Everybody!

I would have never visit this forum again if not something sinister would have happened:

After a final test in 12/2006 at one well reputated ALS-clinic here in Germany they gave me the diagnosis of "BFCS".

After this for more than 2 years apart from slight general twitching everything vanished being unremarkable! No problem with crampy feelings etc. anymore!

Around Christmas 2008 I had suffered from a severe cold (virus infection). I did not rest enough and started with physics maybe too early. After two hours on a so-called "cross-trainer" evreything came up again:

-severe fatigue
-increased crampy legs feeling ongoing
-increased generalized twitching

The last days I went to a local Neuro (not the clinic who had done everything before) for checking purpose:

- Clinical exam was fine
- TMS was fine
- EMG conducted in 3 different muscles showed "Pathological Activity" in the calf muscle

She was not impressed very much of it because everything else like motor units etc. of the single EMGs had been o.k. and she stayed to their diagnosis "No ALS". But for the next steps to find out maybe what it could be she ordered a muscle biobsy.

I am totally depressed again anyway due to this dirty EMG-result. What should I do? I am also attending in 4 weeks the specialised clinic again for a 2nd opinion, what do you think?

Could it be that after 2 years of remission everything comes back again?

A depressed and sad Matt:|
 

BethU

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I don't know how benign fasciculations progress ... there is an excellent forum for BFS; the link is on one of our stickies. I'm sure you could get some feedback there from people who suffer from that condition.

It sounds logical to me that if you have any kind of a syndrome in remission, then are stressed by illness and not resting enough, the symptoms could come back. I would assume that when your body is sufficiently recovered from your illness, your symptoms will go away again.

Good luck with the biopsy.
 

crystalkk

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Matt,

Do you have a copy of the Emg report? if you can get a copy and post it.
It might just be something viral going on like Beth said, and will go away again.
 

Matt

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No, I do not have acopy right now as the EMG has been conducted today!

Thank you and all the best,

Matt:|

PS: Still today my right upper tigh is always under tension!
 

Zaphoon

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Matt,

I agree with Beth.
 

olgaschorle

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Hallo Matt, I have the same problem clean tests, but twiches and pain. I live in Germany too. Ich hebe schon viel durchgemacht. :confused::sad:Write me [email protected]
 

jimmybob

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matt,

you might consult with a rheumatologist or infectious disease specialist. many dormant viruses can be triggered and present as muscle fatigue/pain. your symptoms may have an auto-immune origin.

regards
 

Matt

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Update:

Because of the fact that I did maybe misunderstand my Neuro I gave her a telephone call and ask her directly if there would be something hinting towards MND or ALS. She said clearly that her exam clinically and electrophysically would not have shown something leading towards a MND. She did ot mention the maybe pathological activities in one examined muscle anymore but I did not ask her accordingly. To find out more about my condition she would like to order a muscle MRT and later a biobsy, not because she would expect something sinister but to follow up more or less as I wanted to know what kind of "desease" this could be. She said thre are hundreds of muscle deseases which could be evaluated!

Could this also be some kind of rheumatic desease?

On the other side one should have in mind that to give a final/suspected diagnosis of a MND to somebody and especially against the former opinion of one of the top-MND-neuros here is something which would not be comfortable to her.

As for myself I intend more for an updated 4th visit at one of the most specialised ALS-clinics her in Germany at March 10th as they have my old record till 12/2006.:confused:

At the moment I have ongoing crampy/rubbery and stiff legs+bodywide fascicullations+ teribly aching knees when standing but vanishing when walking. I could even feel that my legs are somehow vivid. On the contrary I could walk for around 30 minutes and more up to 10 km fast but with some slight pain in my legs. If I take some special kind of pain- and inflamation reducing cream my knee pain is much decreased. If I am sitting on a chair everything gets much better. I had this 3-4 years ago quite the same for months but now it seems stronger on both legs. BTW: My old posts/records helped a lot as I could now compare my current status with the old one and compare maybe deviations, I can recommend this kind of desease history

For me the strongest point against a MND is that I had for more than 2 years nothing like this but only slight bodywide fascicullations. Everything of stiffness/pain/cramps had been vanished. The Neuro said that my progress is absolutely not fitting in the textbook as there are no 2 years of remission but a slightly more or less progress. Hope this is true!

Please, please could you give my some good advice?:(

PS: I am now on a business trip alone here in Asia and my family is at home and I have to be fully concentrated all the time but I could cry!
 

Matt

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One last questions:

I am facing pain and stiffness especially in both knees when standing for a while but it vanished when walking, is this revealing?

Thank you for your wonderful support,

Matt
 

wright

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The story you have shared over the last two and a half years isn't at all indicative of ALS. What on earth makes you think you have it? You have also been told on numerous occasions by a reputable neuro that you don't have it. What more do you want? Obviously something is happening to you but you have been given a diagnosis of BFCS, so why can't you believe that, given that your symptoms fit that syndrome perfectly? Stop driving yourself crazy, deal with the symptoms you have and RELAX.

Beth also makes a good point when she talked about remission of your condition and then having flare-ups when you are stressed. Autoimmune disorders are exacerbated with stress and the more I think about BFS, the more I'm convinced it is autoimmune in nature (that is merely my opinion and is in no way a definitive conclusion on my part). Some autoimmune conditions hit you and then leave while others can stick around for a lifetime.
 

Matt

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Wright, and I mean this honestly, maybe I need this kind of direct talking from you as to get it out of my head!

The smooth way always to arouse pity and afterwards to be much more a nervous wreck and not to breack the cycle is not helpful!

Thank you!

Matt
 

GlenBrittle

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One last questions:

I am facing pain and stiffness especially in both knees when standing for a while but it vanished when walking, is this revealing?

Thank you for your wonderful support,

Matt

Hi Matt,

I had the same problems before I was diagnosed. I was favoring a weak ankle that I had twisted. By the change in my walking , I had put a strain on both knees and my hips. Multiple visits to my physio therapist helped get rid of the pains completely. What I am really saying is that those pains might be something un-related. See a PT to help.

Glen
 
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